Bringing up seven kids has led to in depth knowledge of asthma, autism, fetal alcohol syndrome and drug induced developmental delay, immune deficiency and autoimmune disease, ectodermal dysplasia, neonatal death and cardiac defect. Despite all of that, I didn't know I was about to start the ride of my life with the illness of my youngest daughter, Ivy.
Malachy was impressed with the sharks at the Aquarium and told us that he could talk to the stingrays. The way they followed him around I could believe it. Got something to share? Why don’t you join in this Special Exposure Wednesday. Please remember your comment love at each link you visit. Also posting at Three Ring…
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PICC maintenance days are not our favourite. Especially after IVIG, a blood test and a neck ultrasound. She hates the poking and prodding and I hate watching her go through it because sometimes there just seems like there is nothing I can do to help her. Got something to share? Why don’t you join in…
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Apologies for our absence. We were in the hospital. We made it out for Christmas just in time. I’m still getting over the shock of it all; Ivy lost her brand new port, not five months old and now has another PICC. She was septic and although I am thankful that her heart and her…
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This is how we spent our day yesterday. Filming for a documentary segment about immune deficiency and the importance of blood donation. It was a big day and Ivy was exhausted by the end of it. Got something to share? Why don’t you join in this Special Exposure Wednesday. Please remember your comment love at each…
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Ivy and Noah celebrate turning five. Oh what an amazing five years it has been. I have been a little bit wistful this year. Remembering how they started life on the outside. Remembering the night they were born. Marveling at everything, at them. It will be strange, I think when they go off to school…
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Ivy and Noah overcame prematurity – born at 30 weeks. They overcame hypertonia (Noah) hypotonia (Ivy), feeding issues, allergies, issues with their lungs and developmental delays. In a week they will be 5 (and we’ve started celebrating already) It has been an amazing journey of the heart and the spirit. Got something to share? Why…
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There is nothing better than a pre school disco, a sausage sandwich and the company of your twin brother to make your day and even though you’re exhausted within the hour, you still class is as ‘the best night EVER!’ Got something to share? Why don’t you join in this Special Exposure Wednesday. Please remember your…
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To a doctor, she is an immune deficient, auto immune diseased, adrenally suppressed female, with MMP (multiple medical problems). She has cushingoid features, has severely decreased growth and Ectodermal Dysplasia. To me she’s just Ivy, beautiful, vibrant, sassy and strong. I like my description better. Got something to share? Why don’t you join in this Special…
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Apologies for last week. This was us: Earning us three days in the hospital but this was taken yesterday: I’d say she’s doing much better. Got something to share? Why don’t you join in this Special Exposure Wednesday. Please remember your comment love at each link you visit. Also posting at Three Ring Circus.
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Looking forward to Summer, Ivy sports her new swimmers, made with love by an amazing internet friend. It covers the port fully. It makes her feel safe and that makes her feel happy. Got something to share? Why don’t you join in this Special Exposure Wednesday. Please remember your comment love at each link you visit….
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